Liam update, from Australia !!

[Guest guest]

Hi Guys

Wow, I have just caught up on all the emails since the convention,I

so wish we could go every year, maybe next year. glad to hear

everyone had a good time and see some familiar faces in the photos.

I cant believe it is a year since we met Dr H at the convention and

she said 'sort that kids reflux and constipation out and he will

have a chance at learning to eat'. Finally we have found a Dr to

listen to us. Liam has been in hospital for 3 days now having his

bowel washed out, and i cant believe he is still going!!! Damian is

staying with him tonight and we are hoping another 600ml dose of

glycoprep tomorrow will finish the job.I can now see why Liam has

not been gaining weight, tolerating feeds, etc etc.

We have(until now) been under a team of Drs who wanted Liam to have

more and more calories, so almost constant feeds through his gtube,

did not believe he had reflux, and never examined him for

constipation. Liam has probably just lost almost a kilogram in

weight in hospital,his new Dr thinks thats mainly what was in his

bowel.If I didnt know better,I would be disgusted that I let my

child get to this, but, I was told by Liams old Dr that Liam wasnt

constipated, that he was soiling his pant for attention!!!

I still think we have a long way to go, our new Dr thinks Liam will

be eating in 3 months, the gtube nurse and I are having a side bet

that it wont be that quick, but, to have a Dr with positive goals

for Liam, is, more than we could have hoped for.This Dr wants to

know more about RSS kids!!

I feel like we are finally on the right track.

Please say a pray for Charlie(2) another RSS in Aust, who had to

have a broken arm reset today in OT.

Thanks for listening, hopefully all RSS kids in Aust will be out of

hospital for the weekend.

Looking forward to a good night sleep

Jody(mum to Liam ?wt dont want to know at present,87cm and Cameron 7)

[Guest guest]

Jody - I met with the New Zealand folks, and we are trying to figure

out if we can do a MAGIC convention for Australia/New Zealand -- but

held in NZ. Harbison and Stanhope have both said they would

attend. This would allow far more RSS and SGA families to be

educated without traveling so far.... Will keep you posted!!!

> Hi Guys

> Wow, I have just caught up on all the emails since the

convention,I

> so wish we could go every year, maybe next year. glad to hear

> everyone had a good time and see some familiar faces in the photos.

> I cant believe it is a year since we met Dr H at the convention

and

> she said 'sort that kids reflux and constipation out and he will

> have a chance at learning to eat'. Finally we have found a Dr to

> listen to us. Liam has been in hospital for 3 days now having his

> bowel washed out, and i cant believe he is still going!!! Damian

is

> staying with him tonight and we are hoping another 600ml dose of

> glycoprep tomorrow will finish the job.I can now see why Liam has

> not been gaining weight, tolerating feeds, etc etc.

> We have(until now) been under a team of Drs who wanted Liam to

have

> more and more calories, so almost constant feeds through his

gtube,

> did not believe he had reflux, and never examined him for

> constipation. Liam has probably just lost almost a kilogram in

> weight in hospital,his new Dr thinks thats mainly what was in his

> bowel.If I didnt know better,I would be disgusted that I let my

> child get to this, but, I was told by Liams old Dr that Liam wasnt

> constipated, that he was soiling his pant for attention!!!

> I still think we have a long way to go, our new Dr thinks Liam

will

> be eating in 3 months, the gtube nurse and I are having a side bet

> that it wont be that quick, but, to have a Dr with positive goals

> for Liam, is, more than we could have hoped for.This Dr wants to

> know more about RSS kids!!

> I feel like we are finally on the right track.

> Please say a pray for Charlie(2) another RSS in Aust, who had to

> have a broken arm reset today in OT.

> Thanks for listening, hopefully all RSS kids in Aust will be out

of

> hospital for the weekend.

> Looking forward to a good night sleep

> Jody(mum to Liam ?wt dont want to know at present,87cm and Cameron

7)